My mother reminded me that just because you have a life-changing disease it doesn’t mean you have to pressure yourself into saving the world. I agree but sometimesI feel this need to hold up a façade of boundless positivity so that everyone else can cope with my illness. I want to hear everyone saying, “Oh, you’re handling this so well, you’re such an inspiration.” What, all my optimism and hard work didn’t matter before? Was I wrong to want recognition for all the hard work I put in before? Was I wrong to feel that I excelled? Was I wrong to say that I did a good job?”
It actually really pisses me off when I think about it. I guess that’s a sign I am healing physically. In fact, physically I’m suddenly amazing (almost superhuman and uncanny) but inside I can hear the demons whispering more loudly than ever.
Why is it that in this society that if you get a disease, and prevail you are a source of inspiration but if you just excel and know it (and you’re female) you’re a bitch? Is our society seriously so jacked up that it’s not ok for a woman to have a healthy self esteem? Every time I say something nice about myself I have to do so with a caviott like, “Not to be conceited” or “Not to sound bitchy but…” If I was a man I wouldn’t have to do that.
Now that I am "diseased" people seem to want to hear what I have to say. If I tell them about my X-Men powers it is ok because now I am a brave diseased person. Now, I can wear the MS badge if I want, I can “play” the guilty MS card and get what I want, I can ask others to do me favors, to fetch to carry, whatever…
Ok, so this isn’t the usual Tizer fair. It’s not uplifting, it’s not grateful, it’s not blessed but boy is it pissed off. I am really angry at my students right now. How can they have the audacity to disrespect my sub? How can they have the audacity to still misbehave after a visit from a dean. Even when I spoke over the speaker phone in Spanish, they still didn’t pull it together. I had to call a stressed colleague to bail me out. I hate that. I like being in the thick of things. I know my colleagues know that I can and do pull my weight but I feel terrible about the burdens placed on them by my absence. I realized yesterday that our communication is breaking down because they are so busy and stressed addressing and filling my absence. I left my friend several messages yesterday to call me and I know she thought it was because I needed bailing out. It wasn’t. I thought she needed me and I felt bad about not being there. She never did call me back and I imagine it’s because she thinks I can’t be of help. I hate that. I have always tried to be everything to everyone. I am over that and I have been drawing boundaries but I feel like my colleagues and my school really need me right now and I’m not there for them.
And, there’s the informational MS meeting I went to yesterday. I was feeling great. BTW, I woke up bilingual, my brain has become filed like a computer with folders of everything I ever learned, I can stand on my head and I think I can even do math like never before. Without caviott, I am a freakin’ genius and since I’m diseased maybe no one will spank me for being a woman with the audacity to say so. I am using at least 15 percent of my brain and I am like a well-oiled machine. Apparently this is actually common in MS patients because the brain finds new pathways to cope with the changes so sometimes MS patients do become like mutants or X-men. Anyway… back to the support group.
I thought I could handle it just fine. I was going to learn about ADA and worker’s rights. I thought I would be ok, but just going into the room made me cry. Reading the pamphlet called “But you look great” really brought things home. It talked about the invisible symptoms of MS, how you look good on the outside but often feel crappy. I look amazing and ripped right now but this morning I cried for two straight hours for no apparent reason. When I was at the support group I could barely keep myself from crying (in the end I did and they were all very supportive and reassuring). I ran to the bathroom three times, not just to cry but to leak water from everywhere. I would think I was done and then water, like when a woman has a baby would leak from my body. I even was drying my hands only to find my underwear soaked and a need to go back into the stall and let the water, and I really don’t mean urine (that’s not where it came from) drip out of me. I was so mortified. I told my best friend but I didn’t tell my husband and I just kept running out. He thought I was running away from him but I was just running towards the bathroom trying to deal with all that unexplained water…
Man, this is all proving much harder than I thought it would be considering I feel so good physically. I imagine this will be very uncomfortable for many people to read but I had to write it. I know that at least other people with MS and their caretakers will relate on some level. I am going to go lose some more water and then go scream at my students about what the real world is like. Wish me luck!
Research on immune activity in MS
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